As I sat alone in a hospital room in shock staring at the wall in front of me, my brain was on repeat. I just kept hearing, “What just happened?” Visions of my daughter, the little girl I had thought about, prayed about, and planned for years for was here, finally.
But the moment that was supposed to complete my family, the last piece in the most beautiful puzzle, was suddenly gone — not just like the piece needed to be flipped over gone, but instead, like someone picked up the puzzle and smashed it, gone. Broken and alone, all I could do was stare and picture her body in my arms.
I had a normal pregnancy up until my water broke at 34 weeks. Still, her stats were great, and we had a C-section because she was breech. It was all very calm and wonderful — until it wasn’t. Harlequin Ichthyosis is not something most people, even those in the medical profession, are familiar with. As they tried frantically to help her, her skin hardened within seconds.
After hardening, it began to split, causing open wounds all over her body. Behind the curtain I began to sense their frantic, panicked feeling, and I asked if things were OK. They told me yes and asked if I wanted more medicine to calm me; after that, I was out for the rest of what occurred. My husband was brought out and made to choose between larger hospitals and told she had a condition but it was unknown what.
My heart stopped, and I became immediately sick. I had never been more affected by any words I had ever heard in my life. I decided at that moment that my Anna couldn’t and wouldn’t die because, to put it simply, I would never be ready for that. If the feeling I had just experienced were to last for more than a fleeting moment, then I would never recover if she died.
I decided to focus on what I could have and not what I couldn’t. I decided that if Anna could wear only fleece, then I would pick the cutest fleece pajamas I could find, and I would match her hat every day. As time went on, Anna’s skin shed the extra layers, and I became more confident in caring for her.
